Miki and Daphne’s love story begins more than 42 years ago, with a poker game, a snowstorm and a first kiss under a streetlight. Both their lives and careers have been dedicated to advocacy, social justice and mental health. In this episode, they record conversations about forging families, finding calm, and staying in love throughout the seasons.

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To see photos, episode transcripts and caregiver resources, go to CalltoMindPodcast.com

Call to Mind is hosted by Debra Sheets, nursing professor and researcher with the Institute on Aging and Lifelong Health at the University of Victoria.

Produced by Jenni Schine (jennischine.com); sound design by David Parfit (davidparfit.com); executive producer, Suzanne Ahearne (UVic.ca).

This four-part podcast series was made possible by the University of Victoria, with funding from the Social Sciences and Humanities Research Council, The Alzheimer’s Society of Canada, The Alzheimer’s Society of BC, Michael Smith Health Research BC, and BC SUPPORT Unit Island Centre.

This is Call to Mind, a podcast series from the University of Victoria, audio stories of love and memory loss.

Okay. So we are going to introduce ourselves. Okay.

Hello everybody. Is there anybody there?

It doesn't matter. You're not speaking to anybody.

Oh, okay.

We're just recording this.

Okay.

Come on. Okay. We're trying to get the dog on the couch. Come on. There we go. Okay. That's April.

Beautiful little dog.

Hello. I'm Debra Sheets, a professor of Nursing and host of Call to Mind. In this series, people living with dementia record audio diaries and conversations about their lives during the pandemic. We're drinking lemonade with Daphne and Miki at their home in Victoria. Miki began her career in the military, but both their lives have been dedicated to advocacy, social justice, and mental health. This is their story about forging families and staying calm and in love throughout the seasons.

Okay. Go ahead. Just talk. Talk your own speed and say who you are.

My name's Miki and I'm living in - where do I live? Hmm. Here's a question,.

Victoria.

Victoria. And we're getting ready to go and get our shots. Hopefully that'll be really soon.

Mm-hmm.

That will make a lot of change in our life.

Boy, we hope so.

Yeah.

It will. It will. Once we have the second, for sure, right?

Yeah. We have a lot of friends.

We have a lot of friends. We have been together for?

Just a sec. Let me see.... it's 42 years.

It is 42 years.

It is.

You know, I actually hate that word journey, to be honest with you. I know it's the word that gets used, and I can't really think of a number one that fits. But I guess, because we've done so much traveling, the word journey to me has very positive, exciting connotations. , in terms of Alzheimer's, just doesn't. There has to be a better word besides journey. So what does journey mean to you in this context?

It's not - I'm just moving is what I feel right. And I'm doing what works.

Right. Getting by.

Yeah, and I know that I can't do the things I used to do. You forgot the kleenex.

I know I forgot to bring it. Miki's a crier, but Miki's always been a crier. This isn't a new thing for her. She's somebody who, you know, cries through all the hallmark commercials.

No, I don't.

Yes, you do. So do you remember when we met?

Oh, did I ever?

Tell me.

Okay. We were playing cards in, at our friend's place. We were living in, we were living in... where were we?

Nelson.

Nelson. There. We figured it out. And we were at this, it was all women and we were playing cards.

I think it was poker.

Poker. We were playing poker. And I had met Daphne earlier in the day, but I had been watching her for quite a while. So she said she wanted to go to cool off because she's a person that is just like a little hot something.

Furnace.

Furnace. She's a furnace. And excuse me, let me start this again. I had run my finger across the back of her neck, front at the office. And then I, you know, kinda looked at her and then I went to this game and she was there and we sat there with all the other players and stuff like that. And then she went for a walk.

What time of year was this?

It was, it was warm.

It was what?

Oh, it was warm or cold?

What was it doing outside?

Raining? No, it wasn't raining. Snow. We had snow. Big snow.

Big snow.

Yeah.

It was the Kootenays and it was December.

Mm-hmm.

Big snow. Well, I went out the door first. I put my coat on and went out cause I was getting all hot and bothered. Right? And I went out the door.

Yeah.

And then you came out the door after me and I went one way around the block.

Yeah.

And you went the other way.

Yes.

Around the block. And then what?

We were - we went to your place.

No, not then.

Oh, okay. I don't know.

No, we walked around. I walked this way and you walked this way and then we met in the middle under a street light.

That's right.

In the snow.

And we kissed.

We did! We had our first kiss in the snow under the street light.

Yes.

Right. Then after the poker game.

Yeah.

You came home with me.

That's right.

And stayed.

That's right.

And that was the beginning of our 42 years together.

Okay. Here we are again. I think it's recording. The little button is flashing. What would you like to talk about?

One of the things that I did through my life, I played sports.

Mm-hmm. Let's talk about that. And baseball was your big love starting at a very young age. Well, how old were you do you think when you started playing baseball? Must have been elementary school.

Yeah.

And that's where you got your name?

Miki.

Miki mm-hmm. You were called Miki when you were young.

Mm-hmm.

Your real name is Anne.

Ann Elizabeth.

Yes, but somebody nicknamed you Miki because .... No? Oh, okay. Because you played the same position as Mickey Mantle.

Oh, that's right.

Remember?

Yeah.

Yeah.

I didn't play with him.

No, no. But you played the same position he did. So you got that nickname when you were playing baseball.

Yeah.

I had two sons.

Yep.

Who were 10 and 12. They were in Vancouver visiting their dad. We never did sit down and have a conversation. You and I about, "so, Miki. How do you feel about raising two sons?"

Mm-hmm.

Cause Miki had been a lesbian basically since - she told me once from the age of four, she knew.

Mm-hmm.

For me it was a whole new ballgame. Never been there. Never imagined being there. It was like totally out of the blue. So for her to be suddenly co-parenting two boys.

Yeah.

Did we ever have that conversation? We never did. They just came home and we sat the boys down. We said "Oh." Do you remember what we told them?

I don't remember.

No. Okay. Well, we told them that we were now a couple and that we weren't gonna shove it down their throat. But it ended up that our house was a teenage drop-in centre because they didn't have any problem with it and they brought all our friends home all the time and had overnights. We went to all our parent-teacher meetings together as a couple. So that was the beginning in the snow in Nelson.

Okay. So let's bring it up to date here. Let's talk about how things are now. Like we have a beautiful home.

Yeah. Okay. I really like being in my room.

Mm-hmm.

You know, like I do different things while in there. I like to be quiet.

Mm-hmm.

With what I'm doing and that feels good.

Mm-hmm.

This house is lovely.

Mm-hmm.

And we're not in a place where everybody can look into the door.

No.

All of that kind of stuff.

So it's private.

Yeah.

Mm-hmm.

We like the private. We've been together all this time.

Mm-hmm. 43 years this year. Yep. We have.

And I love being here.

Mm-hmm.

We do things together.

Mm-hmm.

That part is nice to me.

Mm-hmm.

Sometimes you go and do something.

Mm-hmm.

Because you help other people like I used to do.

Mm-hmm.

Right?

Mm-hmm.

If I'm at home, that's fine.

Yeah.

And I don't feel like I need to go anywhere or go for a walk and not know where I am or anything like that.

No.

None of that happened.

You're happy being at home.

I'm happy being at home.

Right.

But this particular area.

Mm-hmm.

It makes it easy.

Mm-hmm.

To know...

Where you are.

Where I am.

Mm-hmm.

So every time I do something like that - I don't have to ask anybody.

Right.

I'm slowly learning, getting to know people.

Mm-hmm.

But I'm still...

People in our neighbourhood.

Yeah. In our neighbourhood.

Mm-hmm.

We've worked it out, you know, about how we are and we have a clear sense of what I'm like and what she's like. Well, I think I've told you anyway, that I do like some alone time. We don't have the same choices. We have two - what do you call them?

Televisions.

Televisions.

We have totally different taste. Well, not totally. We both love British shows and there's lots of stuff that we watch and enjoy together.

Yeah.

But then there's stuff that we do separately. I'm an HGTV girl. She's a Star Trek girl. So, you know, we have two TVs and she gets to watch her TV.

But if I leave, I'm going to go into the sky.

You're gonna, yeah. Mm-hmm. All right then.

Yeah.

Partly because I'm a Leo, I think.

My God, is she ever.

Oh, she is. But I think patience has never been my strong suit.

Oh, yes. I can tell you about that.

Yeah. OK. However, I have to say, in the last year I have had to learn and work on patience.

Yeah.

You know, I use little tricks like counting down or leaving the room. I mean, all the little tricks of the trade that I've read about out and talked about with my support group and with courses that we've taken at the Alzheimer's society and so on. It's a lifelong challenge, but I am so much more patient now than I was even a year ago. I am way more patient than I used to be. And she doesn't see a lot of it maybe, but anyway, it's so much better.

No, I have noticed your changes.

Have you?

Yeah, and I also started to focus on myself.

Mm-hmm.

So when you're - I don't know how to say this nicely - if you're ahh . I just walk away from you.

Yeah. But I'm not like that.

No, you're not like that.

Anywhere near as often as I used to be.

No, God.

Learning to accept help. It's a big one. And that is another one that I, lifelong, you know, people offer and I'm always the one that helps other people instead of being the recipient of help. But, you know, in this situation you kind of have to. And I'm trying to learn that one, too.

You know, I have a lot of guilt about these months of COVID because I feel really badly that I haven't, you know, gotten Miki out of here.

Oh, thanks.

No, no, no. But like two or three days a week that we haven't gone off and done something exciting.

Oh, just the two of us.

Yeah. To go off and you know, you know, just do more stimulating things. Right? I'm always tired. I just feel like I'm on a base level of exhaustion that is unheard of, for me, I'm pretty much an ever-ready bunny, but not this year.

You need time for yourself.

Well, I know, but right.

So it's been about six months since we did our last recording. So there have been some fairly major changes since then, which I'm sure you'll notice as we go along. Changes, eh big changes, big changes.

Yep.

Our relationship as a couple has certainly changed.

Yeah.

From, you know, a fully functioning relationship to, you know, a very caring, gentle, loving relationship. But not the way it was, is what I'm trying to say.

Mm-hmm.

Well, you know, like most couples as we were together all those years, we sort of had different things that we took care of. I loved to cook. Miki wasn't. She never loved cooking. But when we met, I said, "well, okay, you don't like cooking, but can you read?" And she said, "yes." And I said, "well, then you can cook." And I gave her lovely cookbook and she actually did some very nice meals over the years.

God, I forgot all about that.

Uhhuh.

Right now. I'm just-

I know. So cooking has gone by the board.

Yes.

Because she can't follow the sequence of what to do next. The car was Miki's thing.

Oh yeah.

And she would keep it clean. I don't keep it very clean. I'm sorry. And I also have a job where I'm delivering newspapers every week. So the thing gets filthy all the time. But yeah, the car was her kind of her thing. She would make sure the gas was full and the maintenance was done on time. And gosh, just the fix-it stuff. You know, Miki was very good at carpentry stuff. She built a jewelry box for me. She built a window seat with all storage and everything underneath it. She did all the crown molding in one of the houses that we lived in. None of it's possible now. There's just a lot. It is a lot.

Yeah. For you.

Yeah. Well it is. But it's in a good cause. You being the cause.

Yeah.

Are there things in our relationship that are still the same?

Oh yes.

What would those be? What things are the same you think?

Well, one is that we've come to a place of calm. We're not fighting. We don't argue. We don't do any of that stuff.

Mm-hmm.

And I'm happy with that.

Mm-hmm.

And we figure out how to do handle things that need to be done.

One of the things that has happened really in the last, I would say in the last year, even.

For what?

Well, what you were just saying about. We don't fight anymore. We don't.

Yeah.

You know, we, our relationship has not always been, you know, roses. Right. We have had many issues in our relationship and there were certainly times when it was stressful.

Yeah.

To say the least. Part of it, I think is that I have somehow come to a place of learning patience, which has never been my strong suit, but I am calm. And I think because I am now calm, you are. Well, you've always been fairly calm. I mean, calm and cool and collected. Right?

Yeah.

But I think our relationship has gone from being, you know, major highs, but also major lows. And now we're like on this lovely even keel.

Yeah.

Right. This lovely sort of calm, loving place. Right?

Yeah.

And we are affectionate with each other all the time. We tell each other, we love each other all the time. It's very calm and very loving and it's different than it's been. But I think that is the most significant change.

Yeah.

Wouldn't you say in the last year? Well, in the last, yeah, I say the last-

Maybe couple of years.

Maybe. So how has that change felt for you - that calmness?

I feel it inside mm-hmm and I'm thankful for that.

I think the fact that we had a rather, maybe not tumultuous, relationship, but we certainly had lots of ups and downs in our relationship. Dealing with your dementia all these years, it's, it's been hard for both of us.

Mm-hmm.

But somehow in this past year and, you know, I think part of it, believe it, or not might have to do with COVID because we have been so isolated. So we have had to be together 24 7, you know, with whatever it is that's going on with you.

Yeah.

And I don't know, it's just kind of created this easy, calm, surprising, but calm environment between us. Right? Or in our home with our animals and everything. Right?

Yeah.

Yeah, it's there. It's definitely a surprise because it has been and is really hard. I mean, everything's on my plate now. So that is a burden in the sense that there's a lot to keep track of. But nevertheless, we have come to this place of calm and loving.

Yeah.

And affection and it's pretty special I'd say.

Yeah.

It's quite amazing. Which doesn't mean that, of course, there aren't times when I'm not with you that I don't go screaming off into the woods because you know, sometimes I do, but not around you. Yeah. Not literally, but figuratively. People like yourself.

Yeah.

Who are going through what you're going through. Do you have any advice for them? People who might be listening to this and down the road people who are going into, let's say an earlier stage of this.

Yeah.

Or they know that they're facing that, what kind of advice do you think you might say to them or give them?

I'm not sure that I have the abilities to respond to that. But I do know that I love my wife.

Mm-hmm.

And I'm happy to talk to people. But I can't. I have to be there.

Mm-hmm.

Miki understands that this recording is to help other people, right. Going forward to help other people who are like me as a caregiver and like Miki is who has dementia. So she knows that doing this could help someone else. Right? You know, just by being that kind of calm and loving and supportive person.

I would now want to tell people and talk to them whether I say the words right or not.

I mean, she's always been like that. People talk to her, you know. She has spent her life counseling people and people know they are safe with Miki. They are safe to talk to Miki. She's very, I would say in tune with people who are hurting or needing something, and we're talking about even now, when she can't really express herself very well. But if we're out somewhere and there's someone who is visibly upset about something, Miki is like tuned right in, she may not be able to say anything intelligible, but she is tuned right into how that person is feeling. Right? When they're upset or angry or loud noises, a plane going over. Now, I mean, a loud noise upsets you like, you'll hear a motorcycle and you'll get mad about that because it's an offensive sound to you. I mean it. But it never has been, you know what I mean? Like it's a very sensitive level of awareness of both sound and feeling that is very heightened, I would say, with Miki right now.

Is there anything we could tell people about keeping our love strong during this whole, like as people are going through what we're going through. Is there anything we can say to people about keeping our love strong?

I'd have to think about that one.

We really love each other.

Yeah, we do.

And I think we accept each other.

Mm-hmm.

And we're in this together.

Yeah.

Forever.

Yeah.

Right. And that's the truth.

Yeah.

Right? We have a strong love and we see other couples that are in the same boat that we are. Yeah. And we're all paddling like hell, but we are very sure in our love for each other. And that has definitely not changed.

Yeah. That's true.

What makes you feel happy?

You.

Me. Thank you.

I love you, Honey. Big time.

Since their last recording, Miki and Daphne are back to enjoying more in-person activities, their love still strong.

This podcast series was produced by Jenny Schine. Sound design by David Parfit. Executive producer, Suzanne Ahearne. And I'm Debra Sheets, professor of nursing and research affiliate with the Institute on Aging and Lifelong Health at the University of Victoria. Caregiving is hard, even though it brings joy and meaning. We hope this podcast gives you a deeper appreciation for family caregivers. Thanks to other members of the podcast team: our research assistants, Ruth Kampen, Cynthia McDowell, Matt Cervantes, and Chanel Mandap. And thanks to the Voices in Motion choir in Victoria. To see photos, read storyteller bios, and access episode transcriptions, go to our website at calltomindpodcast.com. And for more resources and supports go to alzheimer.ca. This podcast series was made possible by the University of Victoria with funding from the Social Sciences and Humanities Research Council, the Alzheimer's Society of Canada, the Alzheimer's society of BC, and Michael Smith Health Research BC.